By Paula Hartman Cohen, one of the experts with the NFDA Work/Life Resource Program (EAP)
Autism – also called autism spectrum disorder (ASD) – is in the news and on the minds of many parents, but what is it?
This elusive word describes a condition a person can be born with that makes it hard for him to learn to speak or to do basic skills. You cannot see or prove autism with the usual medical tests, such as blood tests or X-rays, but a doctor trained in testing for ASD will know if a child has it. Here is what it might be like to have autism spectrum disorder:
- Imagine yourself trapped in a box made of one-way glass. People on the outside can see and talk to you, but you are not able to see or talk to them.
- Maybe you must sit next to a very loud air conditioner all day. It makes so much noise, you cannot think about anything else. Not only does the sound take up all of your attention, it scares you.
- Or, what if you live in a place where you understand what people say but do not understand the culture? Because you do not know what people expect or want, you get in trouble every time you say a word.
Autism interferes with the way a child learns to talk, communicate and behave. It has nothing to do with how smart a child is, but it gets in the way of the development of intelligence because it prevents learning. As a child grows, this disabling condition does not go away. But with the help of the child's family, special educators and others trained to work with children with ASD, he or she may be able to learn how to go around some of the obstacles autism puts in his or her path.
Parents usually see the signs of autism first, but doctors and teachers also might notice something is wrong with the way a young child develops. He is late learning to walk. Or, she does not respond when her mother speaks to her. Even with a teacher giving him special attention in school, he cannot seem to learn how to write or read.
About 17 percent of U.S. children are born with some disability that affects the way they learn and/or grow. About 2 percent are born with very serious problems, such as intellectual disability, cerebral palsy, hearing loss or severely impaired vision. Others start life with learning disabilities, attention-deficit/hyperactivity disorder or autism. Some have several disabilities.
A Spectrum Disorder
Autism is called a spectrum disorder because it is different for everyone who has it. Some people have mild symptoms and some have severe ones, but all are related to language, communication and unusual behaviors.
One child might not be able to speak and another has difficulty knowing how to act around people. A child with very few problems might do well with help but another might have many, many difficulties. Most people with autism spectrum disorder fall somewhere between the two extremes, with their own combination of strengths and challenges ranging from mild to very troublesome.
In fact, experts in the field say if you look at 100 children with autism, you will see 100 different combinations of autism symptoms.
“I remind my students that we all have strengths and needs,” explains Skott Freedman, a speech pathologist specializing in work with children on the autism spectrum. Some people cannot sing, he says. Others have trouble with math. People with ASD have challenges learning language and social skills, but often find other ways to interact with the world around them.
Diagnosing and Describing Autism
Until recently, doctors pigeon-holed people with autism into one of several categories. That practice ended in 2013, when new diagnostic guidelines were released.
Today, a person’s strengths and challenges are included in the diagnosis. Anyone with symptoms and patterns of autism is on the autism spectrum or has autism spectrum disorder (ASD). In addition, they are described by how they function socially, intellectually and verbally.
For example, a child may be diagnosed as being on the autism spectrum with normal IQ and low social interaction, or on the autism spectrum with high verbal skills and obsessive symptoms. The descriptive parts of the diagnosis come from interviews with the child himself, his parents, teachers and others. The doctor observes and tests the child, then takes everything into consideration to make an accurate diagnosis.
No one knows how many people in the United States have autism. The latest estimates are one in 68 children according to the Centers for Disease Control and Prevention.
In the last 20 years, the number of new cases of autism has jumped dramatically. This may be because more children are being born with the disability, or because more are being diagnosed. Heightened awareness brought about by the media encourages parents to get their children tested if they spot symptoms.
Most children with autism spectrum disorder start showing symptoms by the time they are 18 months old. They may seem shy, or a little slow to speak or interact with others. Some develop normally for a few years, and then start to change. They may lose many words and motor skills they once had.
Every child with autism is different, but all have difficulties with language, interactions with others, or behavior. Be aware, if your child:
- Does not start talking until after age two
- Says words but does not seem to understand what they mean
- Speaks with an unusual tone or rhythm
- Does not respond to his name
- Does not want to cuddle
- Pushes people away
- Prefers to play alone
- Does not make eye contact
- Moves constantly
- Is very sensitive to light, sound or touch, but not to pain
- Is easily distracted
- Cannot stand a change in routine
- Rocks, spins, flails his hands or does other repetitive movements
If you believe your baby is not developing the way he or she should, talk to your doctor. Tell your doctor about the worries you have about your child.
The doctor will spend time with her and make notes on what she says and does. Doctors use a checklist to help them decide if he or she is likely to have ASD and, if so, what type. Then, your doctor may send you to a medical center or specialist for a more detailed examination.
If your child is diagnosed with autism, your school system will want to do its own tests to help them decide how best to help your child in the school setting. These tests will not involve anything painful to your child.
Since ASD is a recognized disability, schools must provide educational special services to children who have it. There are many new ways to teach and materials to use for children with ASD, including videos, books and cell phone apps. Some school districts have set up special training programs for teens and young adults with autism to help them learn the skills they will need to live on their own.
It is hard on the parents and family when they have a child with ASD. They need a lot of support. Local recreation departments and religious organizations are beginning to restructure some of their programs to make themselves “autism friendly.” The more we learn about this disorder, the more ways we will find to support the families and individuals dealing with it.
The Work/Life Resource Program (EAP) offers a toll-free hotline staffed by experts who can suggest resources and offer support, along with unlimited access to online resources for:
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